Sarah’s Myeloma Blog

Hi folks, quite a few people have been trying to find out how I am from my now seriously out of date blog. Sorry!!

Well, I’m generally doing fine: still in remission and only having appointments about every 6 weeks. Would be longer but my immune levels are still trundling along at the low end of normal and I guess my recovery is still a bit slow, especially in terms of stamina.

Some medical details for the interested: I didn’t have polymyalgia. My muscle aching did improve a fair bit until recently when I went down with a mysterious bug/virus (not swine flu - but had to have millions of swabs etc just in case) and have gone backwards a bit. My nerve ending tests did reveal marked deterioration in sensation in my feet and legs since the tests a year ago - much as I thought. I have been trying Gabapentin which helps with the nerve ending pain (and is also used by epileptics btw). It’s strong and you have to build up the dose - in my case to 12 tablets a day. It really doped me up - I was sleeping solidly (first time for years) but feeling very, very groggy on waking. So I weaned myself off it, only to realise that actually it was helping with the leg and foot pain, perhaps more than I thought. So when I have finished with these nasty antibiotics, I might try to very slowly build back up to a dose I can tolerate.

I have continued with the clinical psychologist appointments which have been very helpful. I can see that I’m not only dealing with the cancer issue itself and my worries about how that has and will affect the family, but also am in a sort of mourning for my job now I am retiring. It’s quite upsetting sometimes, but I think has been very positive in exploring a whole range of issues.  I will say more on this when I’ve got more time in the future. I have been given a ‘mindfulness’ DVD which is also interesting in its approach. I do think it’s important not to constantly give out a message that cancer sufferers are all ‘brave’ etc - sometimes we are and sometimes we’re not and it’s important to acknowledge that life-threatening diseases have both physical and mental repercussions both of which should be treated/taken seriously.

What else - well I have done a fair amount of union stuff, even doing a few events (including one very short march!). I’ve pottered in the garden and we’ve been away to the Isle of Wight for a break and to scatter mum’s ashes at last. Currently I’m suffering the usual side effects from very strong antibiotics for my bug - I always get thrush and lose my appetite. I’ve also had a whole batch of childhood vaccinations (my immunity was wiped out by the transplant) and am due to have a booster dose of some of them tomorrow if I’m well enough - I have been warned I’ll feel worse this time round - oh joy!

Not much else to report that I can think of - I’m hopelessly foggy by this time in the evning. I will try to do some short updates a bit more frequently. Meanwhile, thanks very much for everyone who has sent messages/emails - I will get back to you all, but am just a bit slow at the mo as I’m tired. Have a lovely summer - try not to let the weather get you down!

Hi everyone. Just a little update. Had my checkup a week and a half ago - my regular blood tests were marginally improved, but I still feel they are a bit low! No light chains available, but they are testing to see if I have polymyalgia (condition usually of the elderly which makes your muscles etc ache). I have had some discussion about sleeping problems - I have been prescribed tamazepam by my GP, but a full tablet makes me so doped up! At the hospital they think they might help with the muscle aching, but I don’t want to feel sleepy all day. I may try half tablets on a more regular basis or just accept being awake! Beta blockers may be an alternative, but they do lower your blood pressure and mine is already quite low. I did think I was making progress with the Zantac for indigestion, but have not been so good recently - however, I have been a little more relaxed about my diet and I think therein may be the problem. But low fat no choc diets are so boring!!!!

Yesterday I had a really positive visit to the clinical psychologist. I have felt low on and off for some months, which can be a feature of coming off treatment and being in recovery, and associated worries  and being physically run down.  I rejected the idea to start with (I always felt I was strong enough to cope)  but Bob said why not go, when I complained about my moods later. Before I went I brainstormed (mark of a teacher!!) my feelings - what was bugging/worrying me. I also wrote down positives and possible solutions. That exercise in itself was good - I was surprised at the results! The lady I saw was lovely and I basically just yattered away for over an hour (how anyone can listen to people all day pouring out their thoughts is beyond me). I did get upset briefly at the end, but felt very positive afterwards and haven’t felt low at all today. Talking to someone objective is really helpful, as you don’t need to ‘dump’ on the family. Often people feel the need to keep up a ‘face’. I am having another session soon and maybe able to explore my feelings a bit further. I would recommend it to anyone who has had treatment and is feeling low - but there was a waiting list!

I have taken the decision to try to get retirement through ill health. It’s difficult to get, but if I can’t get it I will take early retirement. It is a shame but I can’t see me recovering fully enough to get back to teaching for ages, if ever and I want to stay in remission as long as possible. The school is starting off the process which could take 2 or 3 months. I’ve got a nerve ending test coming up which should help with evidence and I shall probably ring the unions for any advice on how to apply. It’s a very strange feeling to be doing all this, but I have to change my priorities. I also have quite a few projects and other activities to keep me busy. I will miss all my friends amongst the staff - I really miss the social contact at the moment. My daughter commented very perceptively that I had a need to feel useful - so true - it’s one of the things that bugs me!  But I think it is the right thing to do.

Anyway really tired now (didn’t get to sleep until 3 last night!), so will write again soon. Thanks again to everyone who is keeping in contact by whatever means - it is really helping.